Happy Easter!

First of all, Happy Easter everyone! I hope you all had an enjoyable and relaxing break, and didn’t eat too much chocolate…

My Easter eggs :-)

My Easter eggs 🙂

Easter was great for me – up until last night…

Routine is vitally important. I have to have three regular meals and my tablets taken at normal(ish) times. Plus it helps my epilepsy if I get up at the same time every day, and go to bed at the same time every night. But it’s Easter! That means four days off work. So guess what? That all went a teeny bit out of sync.

We decided to go to my in-laws on Saturday and stay over until Sunday morning, when we’d come back and go my parents’ for lunch. I was fine on Saturday. I went to bed a bit late but I didn’t feel any problems. The clocks went forward Saturday night, of course, so I woke up at half 8, thought I slept well, but didn’t have any breakfast (whoops). I didn’t feel hungry but that doesn’t normally stop me. I guess I just got complacent in being more ‘normal’.

I had a good lunch at my parents’ and everything was fine. My husband had been planning to go out with the lads for some drinks and he did so. Because I’d had a big lunch, I didn’t eat any dinner until quite late – perhaps too late. I stayed up a bit later than I would had I been working today (again, whoops), and I started feeling a bit “wobbly” about 11pm. I sent a text to my husband just in case, and quickly tried to get to sleep.

I didn’t get to sleep in time and had a tonic-clonic seizure.

I didn’t think it was a good idea to be alone, so I tried to ring my husband but couldn’t get hold of him. I texted my mum but she was asleep by then. I went on Facebook (it is good for some things) and his brother was still awake. I told him what had happened and he somehow managed to get hold of him. My husband came back straight away, even though he had no money for a taxi and had drunk too much to drive. I told him not to drive because he wouldn’t get home alive! And so he ran all the way home from the other side of the city. He kept on saying that he shouldn’t have gone out – but he wasn’t to know. I couldn’t even tell myself. I hadn’t had any absences the whole day, which normally precede my tonic-clonics. This was just different in some ways.

I woke up and as usual, I had the worst headache ever and my right arm ached. Usually all my muscles hurt, so I’m guessing it couldn’t have been that bad. I also wet myself. Luckily I was wearing PJs so I could just change them… That wouldn’t have been nice had I not been at home!

It’s times like these that you realise how much other people care about you. My mum made sure I called her once I woke up and my in-laws were all so willing to do anything as well. And my husband is amazing ❤

So it may have disturbance in routine that triggered this seizure but my medication has changed too. You see, I am 0.5mg of clonazepam once a day to control the absences, 1000mg twice a day to control all seizures, and I was on 200mg twice a day to help both. However, when I went to see my neurologist, she suggested I try coming off one of the main two and asked me which one I thought was controlling my seizures better. I told her that I had no idea (the truth – I’ve been on that many different combinations) but I did know that I’ve tried Keppra alone and for whatever reason it wasn’t controlling my seizures fully. Saying that, my seizures still aren’t fully controlled… So I chose to come off the Keppra and stay on the zonisamide.

Then a few days later, I researched birth defects in both medications (in case I have a family) and although both are new and little research has been done, Keppra is regarded as safer. I called my epilepsy nurse and he said it was fine for me to change – but just decrease the 2oomg to 100mg before my neurologist appointment in August.

Now I think this was pretty stupid of me, but I found some 50mg tablets in the house and my manager wasn’t in last week – so I didn’t want to just go wandering off to my GP’s. So I thought I’d reduce my morning dose to 150mg for one week and keep on the 200mg at night, reducing it gradually, as you are supposed to. I probably could’ve done it using 25mg tablets if I’d gone to my GP which would explain the seizure… Apparently, zonisamide isn’t even meant to control tonic-clonic seizures (though I vaguely remember my neurologist saying he had seen “some” success in it – he is the top guy in the country so he knows his stuff!).

So now I’ve got to decide whether to give it another try, go to my GP (well, I’ve got to do that anyway I do believe) and phone my epilepsy nurse for advice (again, I believe I have to do that).

I just wish I could get it fully under control.


About katesds

I was diagnosed with juvenile myoclonic epilepsy when I was 11 (though I was having what the doctors thought were febrile convulsions up until the age of 5). I'm now 28 and have absence and tonic-clonic seizures, triggered by tiredness. I've been on every AED going but it's still not fully controlled. I'm waiting for the magic cure. Epilepsy affects my life in every way but I try not to let it control me. I am not an epileptic, I am me with epilepsy!
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